Supporting husband

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My husband was diagnosed with tonsil cancer with lymph node involvement in January and finished a 6 week course of RT and 2 cycles of chemo at the end of March.  He needed an NG tube from the end of week 3.  He showed marked improvement about 3-4 weeks post treatment and had his NG tube removed at 6 weeks as he was able to eat and wanted it removed.  However, although he is able to swallow without difficulty, he is finding it very difficult to eat much.  He has very little taste and feels full after eating only a little.  Also he says that he just has no desire to eat.  He is having some of the drink supplements, but I am worried that he is not getting enough calories.  I keep trying different things to tempt him, but to no avail.

  • Hi I had same diagnosis I found little and often to start with the thought of a full 3 meals a day freaked me out. I found 6 small plates spread through the days helped. I took the mantra food is fuel and eat to live not live to eat there will be good day plus bad days some days 2 steps forward and - step back . My blog below might help. I aimed for 2500 calories each and every day You can get decent calorie  smoothies adding nut butters protein powders etc. I supplemented by adding ensures inti the mix. One day at a time  he will get there. Make sure te drinks enough as well 

    Hazel 

    this might help 

    www.yumpu.com/.../cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Thank you Hazel.  I have read your blog and found it very helpful.  

  • Hi. It’s difficult as a carer to not nag. I think all you can do is to say you’ve been on here where it’s made clear that all this is normal. Maybe even encourage him to look himself. As hazel points out food is fuel at the moment. I made myself eat. If I could get it down I did. To be honest I could have not eaten for  six months. But I knew I had to make a recovery and I did, a good one. I wasn’t happy with my taste for a year. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi, I am currently going through recovery after my 2nd surgery for local recurrence of ACC. I too have been having issues with lack of appetite and even an aversion to food. I have lost some weight, but i have found that the Ensure Compact drinks which are only 125ml but are 300 calories are "doable". Also Asda do a high calorie Yogurt that is also almost 300 calories.I have had a Free Fibular Flap Mandibularectomy, so I am restricted to soft food only. I do struggle, but the Ensure Compacts are so small that I can manage them and they help me get enough calories in. Good luck.

  • Things have been pretty good since my husband finished treatment at the end of March.  His eating, taste and dry mouth have improved and he is back to his old self in most respects.  However, his 3month scan showed 2 spots on one  of his lungs and the follow up scan 3 months later show they have grown slightly and that there are a few more even smaller ones, so he has been referred to the oncologist again.  We got a terrible shock when he told us that he can't cure it and that he might only have 2 years with treatment.  To say I am devastated is an understatement.  We had only just started to enjoy his retirement when he was first diagnosed, and now it looks like we haven't got much time left. Sorry to be a downer, but I just want to scream and shout.  I have managed to stay so positive throughout his awful treatment but .now I feel that all my hope has gone.

  • So very sorry to hear your husband's bad news, especially after all you both came through already. Prayers and thoughts with you both, Tina x

  • I have managed to stay so positive throughout his awful treatment but .now I feel that all my hope has gone.

    I’m so sorry to hear that. There is hope in the form of immunotherapy and there are trials in progress combining immunotherapy with cancer vaccines and peptides. Please ask the oncologist for up to date info. Your husband might be eligible. There have been some good responses to immunotherapy 

    I have a contact who has been on Nivolumab for five years. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • So sorry to hear your sad news. As others have said immunotherapy has been having good  results recently. Ask your oncologist to investigate what trials are on offer at the minute as well. 
    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • So sorry to hear this news. I hope you find a treatment option that helps you. Thinking of you.

    Mike 

  • I am so sorry - that is so hard, after all you've been through together. It's what we all fear. Treatments are advancing all the time though. I hope you and your husband can make the most of now and come to terms with whatever the future holds. Sending love and luck

    Catriona

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Dec 2023 one year all clear. See my profile for longer story